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Commentary on: Stamou V, La Fontaine J, Gage H, et al. Services for people with young onset dementia: the ‘Angela’ project national UK survey of service use and satisfaction. Int J Geriatr Psychiatry. 2020;1–12.
Implications for practice and research
Results highlight improved performance on quality indicators of specialist services for people with young- onset dementia (YOD) over generic dementia services and neurology, indicating commissioners should configure future dementia services to include YOD specialist teams.
Reasons for reported regional variation in UK service provision is needed in future research to explore potential cultural and geographical influences on care and support pathways for people with YOD and their families and improve knowledge about optimum service delivery.
People with YOD, onset <65 years, experience wide-ranging, specific and distinct needs in relation to their age and life stages,1 which particularly affect processes of diagnosis and ongoing support. Evidence on experiences of current service provision is sparse, small-scale and predominantly qualitative. Thus, evidence for commissioning effective, age-appropriate services for this marginalised group is limited.
The study purpose2 was to gather baseline information on current YOD service use, cost and satisfaction to inform future commissioning and service provision. A cross-sectional UK-wide survey was designed to elicit information from people with YOD and/or an involved family member/supporter. The questionnaire was codeveloped by the research team and the project PPI group and twice piloted to ensure acceptability and suitability for use by people with YOD. The study aimed to recruit as many participants as possible and no sample size was determined. Data were collected via online survey but paper questionnaires were also available. Analysis compared responses from people with YOD and family member/supporter responses.
Of 233 usable responses all provided data about the person with YOD and their dementia experiences. The mean age for those with YOD was 62, half were men, 97% were white. Most family members were female spouses, mean age 59. Most commonly diagnosis of dementia was made in specialist memory clinics or neurology services: type of service was found to determine quality of care postdiagnosis. Continued support, in the first 6 weeks and beyond, was provided by specialist YOD services but ongoing management by generic services, in relation to four care quality criteria (seeing same professional, having care plan, having key worker, knowing who to contact), although variable, was lacking overall. Both satisfaction and quality of care were higher in specialist YOD services. Caring was provided for more than 5 hours daily by around 60% of family carers (mainly spouses). Median health and social care costs for 3 months were £394 and costs of informal care were £8372.
The importance of this study is its size, its wide-ranging coverage (14 UK NHS sites) and focus on perspectives of people with YOD, their family and supporters. Staff were not asked to complete the survey, instead this study provided information from groups known to have challenges effectively engaging in research and evidence generation.3 The high level of responses by people with YOD (some of whom were assisted by another) is laudable. Researchers used the numbers who needed under (43%) or over (57%) 5 hours of daily care, together with the extent to which the person with YOD could be left alone (not at all (27%), <1 day (50%), >24 hours (23%)) to indicate severity of impairment due to dementia among respondents. This showed good variation across the respondents and with the wide geographical distribution increases the likely representativeness of the results.
The survey results showed a clear relationship between the service which undertook and delivered the diagnosis, the postdiagnostic quality of care and the satisfaction with services reported by people with YOD and their families. Specialist services were better than non-specialist neurology and generic mental health services in all respects. However, this was a self-reported survey with associated limitations, as acknowledged by the authors.The variability in services described by respondents highlights the need for commissioners to review current provision and configure services to meet specific requirements for people with YOD, using evidence provided by this study.
Patient consent for publication
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Commissioned; internally peer reviewed.